A couple of years ago, I was visiting a friend in Washington DC who was suddenly badly injured in a fall. I duly rushed him to a nearby hospital, tried to explain to the medical staff what had happened, and then encountered a big, unexpected hitch.
Back in the UK, where I used to live, I took it for granted that a doctor who needed someone’s health records could place a phone call or tap a computer button and get (more or less) what they needed. To be sure, there are issues of data privacy; and sometimes records get lost.
But my experience of the UK National Health System suggested that data could always be assembled fairly fast — unless the patient objected.
But in the Washington DC hospital, I discovered that it was virtually impossible for doctors to get a quick oversight of someone’s medical history or even to see the most basic facts if these were scattered between different hospitals, even after a few hours’ delay, and even if the patient (or his family) agreed.
In this case, for example, my friend had dealt with different hospitals along the East Coast. As a result, his data could not be quickly assembled, and the doctors ended up filling in the forms on the basis of some (highly unscientific) guesses from him.
I have since come to realise that this was not an unusual experience. In much of the US, medical data is held in various records that are very hard to gather together. My commonplace tale reflects a peculiar paradox in a country that prides itself on having some of the most cutting-edge technology in the world — just think of Apple, Google and Amazon.
So it is perhaps no surprise that a host of savvy new tech players are trying to enter the medical data field, hoping — belatedly — to push it into the 21st century.
A few days ago, for example, I met Elizabeth Holmes, one of America’s most successful young entrepreneurs and one of the rare female tech billionaires. Holmes dropped out of Stanford University a decade ago, at the tender age of 19, to create a company known as Theranos. What Theranos essentially does is offer patients (and their doctors) a means of tracking their medical history and diagnostics from medical tests.
The idea is that if patients can control this data they cannot only manage their illnesses better — or deal with an injury — but also get more proactive about protecting their health. If they have cheap access to blood tests showing whether they are susceptible to diabetes, say, they can act on that information; or so the argument goes.
It sounds like an utterly commonsense idea. But the reason why Theranos is relatively novel is that the cost of diagnostic testing has always been sky high — and patients do not have an automatic right to see all their data. “We believe access to actionable health information is a basic human right,” Holmes likes to say, noting that the lack of this “right” in America today contrasts with other rights (say, to buy a gun).
Theranos and other biotech companies are now lobbying to change this, with some success. Earlier this year, for example, Arizona became the first state to give individuals the right to access their own health information. But it could take years before this is accepted across the entire country or before patients obtain the right to move data across borders.
Of course, if you are an optimist, this is precisely why the US needs energetic entrepreneurs. And if you are a diehard optimist, it is possible to hope that future historians will see this story as an example of how some of the best pieces of the American system (namely, corporate creativity and entrepreneurial zeal) can defeat some of the worst (entrenched bureaucracy). If so, that will undoubtedly make Holmes even richer (Theranos is now valued at $6 billion to $10 billion.)
And, unsurprisingly, hundreds of other entrepreneurs and institutions are jumping on the bandwagon of health care IT. Cleveland Clinic in Ohio, to cite another example, now offers its patients a portal that lets them assemble and control their data for the first time.
But for most US patients — be they in Washington DC or elsewhere — the situation remains a stark reminder of the gap that still exists between the hyper efficiency and rationality of Silicon Valley and the rest of the country. At any rate, if I ever need to go to a hospital again, I will be better prepared — and, hopefully, clutching the data I need in my entirely old-fashioned human hand.
— Financial Times
